This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

Resources

Please note, this page is under construction. We will be adding to the links as time permits, and most likely splitting it into two pages "Information and Support" and "Products We Used."   In the interests of getting the information out there sooner, we have put it all onto one page.  Please pardon our dust while we make improvements.  Thank you.

We spent a lot of time while we were a "medical family" searching for things on the interet.  We searched for families like us to talk to, for special formulas at a price we could afford, for bottles and cups that our son might actually be able to use, for medical equipment we thought might help, for ideas, and for answers to our endless questions.
With this in mind, we have put together this page of resources.  Again, we cannot guarantee that you will find what you need, or they have the best prices or will be good merchants.  What we can say is that we tried them and found them useful in some way, and if they were merchants, they delivered what we ordered in a satisfactory manner.

If you have a link you want to add, please contact us.  We are happy to put a section of "reader suggestions" at the bottom.

FOR INFORMATION AND SUPPORT:

Aaron's Tracheostomy Page  http://www.tracheostomy.com/

The Message Boards on Aaron's Tracheostomy Page:  http://www.tracheostomy.com/forum/index.php

The National Craniofacial Association:   http://www.faces-cranio.org/Disord/PierreRobin.htm

The Pierre Robin Network:  http://www.pierrerobin.org/

 FOR SUPPLIES:

Different bottle options for babies with a cleft or poor suck, plus a list of suppliers:  http://www.cleftadvocate.org/feeders.html

PRODUCTS WE USED:  (your DME may be able to provide some of these for you):

Bottles and Sippy Cups:

Special Needs Feeder (formerly known as the Haberman):

You can attach the nipple and ring to a traditional bottle, and any Medela bottle will usually do the trick since it is a Medela product.  The hospital provided ours, so I never had to actually buy one.  There is a variety of pricing options at the link below:





Pigeon

You can buy just the cleft palate nipples from some online providers, and one bottle, then work with more inexpensive bottles to see how to make it fit.  The Cleft Advocate link above contains the English instructions and some tips on how use this product.  The price for the nipples and bottles are not cheap, but you shouldn't have to buy the whole package at the price quoted in the Amazon link below.   At least, I don't think you should.  I didn't.



Nuby Soft Spout Two-Handled Cup:

We, and other cleft palate families, had good success using this cup as a starter sippy.  The spout sometimes has to be bought separately (comes with a nipple), but the spout is silicone and can dispense liquid by "chewing".  If you try this and it works, buy a lot of the nipples and spouts, because the sizes of this cup that are available for sale have been known to change with the season:



Honey Bear Straw Teaching Cup:

This straw teaching cup was a breakthrough for us.  The bear's stomach can be squeezed to push the liquid up the straw and into the mouth, so kids can use it by squeezing or sucking.  (See at link)  http://www.talkingchild.com/shop_HoneyBearCupwithStraw.aspx  Unfortunately, Amazon does not have a picture I can show you right here on this page.

Breast Pump Supplies:

We pumped primarily using a hospital grade pump that we rented.  When the rental period was over, and for times when we needed to travel, we used a Medela.  (It was a lot lighter and more portable than the hospital grade machine.)  Here are some Medela products you may need if you use or wish to use a Medela machine. 




These and other products, including extra large flanges (or "Breastshields" in Medela lingo) up to 40 mm, are available directly from Medela at http://www.medelabreastfeedingus.com/products

Formula Supplies:

Elecare:

We were on this formula awhile.  Occasionally, Amazon was the cheapest price, but keep an eye out for sales from smaller vendors.  Unforunately, the vendors we often used are either gone, or we have lost the names. 
 

 
Nutramigen AA:  (Note -- this is NOT the same as Nutramigen)
 
This product was not available when we were in the market.  If it were, we would have tried it.  Elecare (above) is a Similac product, while Nutramigen AA is an Enfamil product.  Some children do better on one family of products than the other, quite possibly because of differences in the viscocity or oiliness of the formula. 
 




Nutramigen:

When Elecare was no longer necessary, we "downgraded" to Nutramigen.  We never had to buy it on our own, so I have no insight as to price.  By then, our DME was paying for all the formula:





Alimentum: 
 
We briefly tried Alimentum (another Similac product) when trying to wean from Elecare.  This product was not tolerated well in our house, but some children tolerate it fine:
 


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